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carofer

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1 reviews

Review for Kennedys Disease Association, Coarsegold, CA, USA

Rating: 5 stars  

KDA was a godsend to me shortly after I was diagnosed with Kennedy's Disease (in 1996). KDA's web site contains information about the disease, personal experiences, and much good advice. The web site acted as a central organizing influence for the sharing of information and brotherhood. Without KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable. KDA provided a point of communication for the NIH, which performed a clinical trial with subjects recruited via the web site, in which I participated. KDA's research donations have been seminal in increasing the knowledge of this disease; at the KDA conferences, attendees can participate by learning more about the gritty details of the biology of the disease. The state of the art for KDA progresses through the KDA's contributions. Weekly chats, forums, and hyperlinks to important sources of information round out the features of KDA that I use. It is an awesome organization.

I've personally experienced the results of this organization in...

Increased my knowledge of the biology, symptoms and effects of this disease. I learned techniques and product information that has proven valuable in everyday life.

If I had to make changes to this organization, I would...

Make it a lot richer so that it could fund more research.

Role:  Volunteer & I participated in forums, chats and conferences.